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Autism Spectrum
Disorders
A publication of NICHCY
Disability Fact Sheet #1
June 2010
Ryan’s Story
Ryan is a healthy, active twoyear-old, but his parents are
concerned because he doesn’t
seem to be doing the same
things that his older sister did at
this age. He’s not really talking
yet, although sometimes he
repeats, over and over, words
that he hears others say. He
doesn’t use words to communicate, though. It seems he just
enjoys the sounds of them.
Ryan spends a lot of time
playing by himself. He has a
few favorite toys, mostly cars, or
anything with wheels on it! And
sometimes, he spins himself
around as fast as he does the
wheels on his cars. Ryan’s
parents are really concerned, as
he’s started throwing a tantrum
whenever his routine has the
smallest change. More and
more, his parents feel stressed,
not knowing what might trigger
Ryan’s next upset.
Often, it seems Ryan doesn’t
notice or care if his family or
anyone else is around. His
parents just don’t know how to
reach their little boy, who seems
so rigid and far too set in his
ways for his tender young age.
After talking with their family
doctor, Ryan’s parents call the
Early Intervention office in their
community and make an
appointment to have Ryan
evaluated.
When the time comes, Ryan
is seen by several professionals
who play with him, watch him,
and ask his parents a lot of
questions. When they’re all
done, Ryan is diagnosed with
autism, one of the five disorders
listed under an umbrella category of “Pervasive Develop-
mental Disorders”—a category
that’s often referred to as simply
the “autism spectrum.”
As painful as this is for his
parents to learn, the early
intervention staff encourage
them to learn more about the
autism spectrum. By getting an
early diagnosis and beginning
treatment, Ryan has the best
chance to grow and develop. Of
course, there’s a long road
ahead, but his parents take
comfort in knowing that they
aren’t alone and they’re getting
Ryan the help he needs.
What are the Characteristics
of Autism Spectrum
Disorders?
is the
National Dissemination Center
for Children with Disabilities.
NICHCY
1825 Connecticut Avenue N.W.
Washington, DC 20009
1.800.695.0285 (Voice / TTY)
202.884.8200 (Voice / TTY)
[email protected]
http://nichcy.org
Disability Fact Sheet #1 (FS1)
Each of the disorders on the
autism spectrum is a neurological disorder that affects a child’s
ability to communicate, understand language, play, and relate
to others. They share some or
all of the following characteristics, which can vary from mild
to severe:
•
Communication problems
(for example, with the use
Pervasive Developmental Disorders (PDD)
or comprehension of
language);
•
Difficulty relating to people,
things, and events;
•
Playing with toys and
objects in unusual ways;
•
•
What are the Specific
Disorders on the
Autism Spectrum?
Repetititive body movements or behaviors.1
Children with autism or one
of the other disorders on the
autism spectrum can differ
considerably with respect to
their abilities, intelligence, and
behavior. Some children don’t
talk at all. Others use language
where phrases or conversations
are repeated. Children with the
most advanced language skills
tend to talk about a limited
range of topics and to have a
hard time understanding
abstract concepts. Repetitive
play and limited social skills are
also evident. Other common
symptoms of a disorder on the
autism spectrum can include
unusual and sometimes uncontrolled reactions to sensory
information—for instance, to
loud noises, bright lights, and
certain textures of food or
fabrics.
NICHCY: 1.800.695.0285
Rett
Syndrome
Childhood
Disintegrative
Disorder
PDDNOS
Current Classification Scheme in the DSM-IV-TR
Difficulty adjusting to
changes in routine or to
familiar surroundings; and
These characteristics are
typically evident before the age
of three.
Asperger
Syndrome
Autistic
Disorder
There are five disorders
classified under the umbrella
category officially known as
Pervasive Developmental
Disorders, or PDD. As shown
above, these are:
•
autism;
•
Asperger syndrome;
•
Rett syndrome;
•
childhood disintegrative
disorder; and
•
The five conditions are
defined in the Diagnostic and
Statistical Manual, Fourth Edition,
Text Revision (DSM-IV-TR) of
the American Psychiatric Society
(2000). This is also the manual
used to diagnose autism and its
associated disorders, as well as a
wide variety of other disabilities.
At the moment, according
to the 2000 edition of the DSMIV, a diagnosis of autistic disorder (or “classic” autism) is
made when a child displays 6 or
more of 12 symptoms across
three major areas:
•
social interaction (such as
the inability to establish or
maintain relationships with
peers appropriate to the
level of the child’s development,
•
communication (such as the
absence of language or
delays in its development),
and
•
behavior (such as repetitive
preoccupation with one or
more areas of interest in a
way that is abnormal in its
intensity or focus).
Pervasive Developmental
Disorder Not Otherwise
Specified (often referred to
as PDDNOS).2
Although there are subtle
differences and degrees of
severity between these five
conditions, the treatment and
educational needs of a child
with any of these disorders will
be very similar. For that reason,
the term “autism spectrum
disorders”—or ASDs, as they are
sometimes called— is used
quite often now and is actually
expected to become the official
term to be used in the future
(see the box on the next page).3
2
When children display
similar behaviors but do not
meet the specific criteria for
autistic disorder, they may be
Autism Spectrum Disorders (FS1)
diagnosed as having one of the
other disorders on the spectrum—Aspergers, Rett’s, childhood disintegrative disorder, or
PDDNOS. PDDNOS (Pervasive
Developmental Disorder Not
Otherwise Specified) is the least
specific diagnosis and typically
means that a child has displayed the least specific of
autistic-like symptoms or
behaviors and has not met the
criteria for any of the other
disorders.
Terminology used with
autism spectrum disorders can
be a bit confusing, especially
the use of PDD and PDDNOS
to refer to two different things
that are similar and intertwined.
Still, it’s important to remember
that, regardless of the specific
diagnosis, treatments will be
similar.
How Common
are ASDs?
According to the National
Institute of Mental Health
(NIMH) and the Centers for
Disease Control and Prevention
(CDC), some form of autism
affects 2 - 6 of every 1,000
children, with the most recent
statistic being 1 in 110.4 ASDs
are four times more common in
boys than in girls, although Rett
Syndrome has only been
diagnosed in girls.5
ances within the brain. These
disorders are not due, however,
to psychological factors or, as
has been widely reported in the
press, to childhood vaccines.6
Is TThere
here
Help Available?
Yes, there’s a lot of help
available, beginning with the
free evaluation of the
child. The nation’s special
education law, the
Individuals with Disabilities Education Act
(IDEA), requires that
all children suspected
of having a disability
be evaluated without
cost to their parents to
NICHCY: 1.800.695.0285
•
Early intervention | A
system of services to support
infants and toddlers with
disabilities (before their 3rd
birthday) and their families.
• Special education
and related services |
Services available
through the public
school system for
school-aged
children, including
preschoolers (ages
3-21).
A Look at ASD Diagnoses in the Future
In early 2010, the American Psychiatric Association released draft
revisions to its Diagnostic and Statistical Manual of Mental Disorders (DSM-5) and invited comments from both professionals
and the general public. The final and official fifth revision of the
DSM is expected to be published in May 2013.7
When published, the DSM-5 is expected to affect how autism
and associated disorders are diagnosed. Among the proposed
revisions are:
•
changing the name of the diagnostic category to Autism
Spectrum Disorders;
•
including Asperger Syndrome, Childhood Disintegrative
Disorder, and PDDNOS under the diagnosis of Autism
Spectrum Disorders, rather than defining them separately
and a bit differently, as is now the case;
•
removing Rett Syndrome from the DSM entirely (and, thus,
from the autism spectrum).8
What Causes an ASD?
The causes of autism and
the other disorders on the
spectrum are not known.
Researchers are currently studying such areas as neurological
damage and chemical imbal-
determine if they do have a
disability and, because of the
disability, need special services
under IDEA. Those special
services are:
All this is to say...stay tuned. The criteria for diagnoses of ASDs
are in the process of changing.
3
Autism Spectrum Disorders (FS1)
Definition of “Autism” under IDEA
Under IDEA, autism is defined as:
.....a developmental disability significantly affecting verbal
and nonverbal communication and social interaction,
generally evident before age three, that adversely affects a
child’s educational performance.
Other characteristics often associated with autism are
engaging in repetitive activities and stereotyped movements,
resistance to environmental change or change in daily
routines, and unusual responses to sensory experiences. The
term autism does not apply if the child’s educational
performance is adversely affected primarily because the child
has an emotional disturbance, as defined in IDEA.
A child who shows the characteristics of autism after age 3
could be diagnosed as having autism if the criteria above are
satisfied.
[34 CFR §300.8(c)(1)]
Under IDEA, children with
a disorder on the autism
spectrum are usually found
eligible for services under the
category of “autism.” In the fall
of 2005, more than 160,000
school-aged children (3-21)
received special education and
related services in the public
schools under the “autism”
category.9 IDEA specifically
defines “autism” as shown in
the box above.
To have a child evaluated to
see if he or she has a disability,
including one on the autism
spectrum, or to access early
intervention services for a child
up to his or her 3rd birthday, we
recommend consulting
NICHCY’s State Resource Sheet
for your state (available online
at: http://www.nichcy.org/
families-community/states/).
You’ll find a listing for early
intervention under the first
NICHCY: 1.800.695.0285
section, State Agencies. The
agency listed there will be able
to put you in contact with the
early intervention program in
your community.
To have a school-aged child
evaluated for an ASD or to
access special education services
for a school-aged child, we
recommend getting in touch
with your local public school
system. Calling the elementary
school in your neighborhood is
an excellent place to start.
What about School?
Early diagnosis and
intervention are very important
for children with an ASD. As
we’ve mentioned, under IDEA
children with an ASD may be
eligible for early intervention
services (birth to 3) and an
educational program appropriate to their individual needs.
4
In addition to academic
instruction, special education
programs for students with
ASDs focus on improving
communication, social, academic, behavioral, and daily
living skills. Behavior and
communication problems that
interfere with learning often
require the assistance of a
professional who is particularly
knowledgeable in the autism
field to develop and help
implement a plan which can be
carried out at home and school.
The classroom environment
should be structured so that the
program is consistent and
predictable. Students with an
ASD learn better and are less
confused when information is
presented visually as well as
verbally. Interaction with
nondisabled peers is also
important, for these students
provide models of appropriate
language, social, and behavioral
skills. Consistency and continuity are very important for
children with an ASD, and
parents should always be
involved in the development of
their child’s program, so that
learning activities, experiences,
and approaches will be most
effective and can be carried over
into the home and community.
With educational programs
designed to meet a student’s
individual needs and specialized adult support services in
employment and living arrangements, many children and
adults with a disability on the
autism spectrum grow to live,
work, and participate fully in
their communities.
Autism Spectrum Disorders (FS1)
References
Tips for PParents
arents
1
• Learn about autism spectrum disorders—especially the specific disorder
of your child. The more you know,
the more you can help yourself and
your child. Your state’s Parent
Training and Information Center
(PTI) can be very helpful. You’ll find
your PTI listed on NICHCY’s online
State-Specific Information (under
“Organizations Especially for Parents”). We’ve also
listed organizations on page 6 that can help you
become knowledgeable about your child’s disorder.
• Be mindful to interact with and teach your child in
ways that are most likely to get a positive response.
Learn what is likely to trigger a melt-down for your
child, so you can try to minimize them. Remember, the
earliest years are the toughest, but it does get better!
• Learn from professionals and other parents how to
meet your child’s special needs, but remember your son
or daughter is first and foremost a child; life does not
need to become a neverending round of therapies.
• If you weren’t born loving highly structured, consistent
schedules and routines, ask for help from other parents
and professionals on how to make it second nature for
you. Behavior, communication, and social skills can all
be areas of concern for a child with autism and experience tells us that maintaining a solid, loving, and
structured approach in caring for your child, can help
greatly.
• Learn about assistive technology (AT) that can help
your child. This may include a simple picture communication board to help your child express needs and
desires, or may be as sophisticated as an augmentative
communication device.
• Work with professionals in early intervention or in your
child’s school to develop an IFSP or an IEP that reflects
your child’s needs and abilities. Be sure to include
related services, supplementary aids and services, AT,
and a positive behavioral support plan, if needed.
• Be patient and stay optimistic. Your child, like every
child, has a whole lifetime to learn and grow.
NICHCY: 1.800.695.0285
5
Autism Society of America. (2008). About
autism. Available online at: www.autismsociety.org
2
American Psychiatric Association.
(2000). Diagnostic and statistical manual of
mental disorders fourth edition, text revision
(DSM-IV-TR). Arlington, VA: Author.
3
American Psychiatric Association. (2010).
DSM-5 proposed revisions include new
category of autism spectrum disorders (press
release). Available online at:
www.dsm5.org/Newsroom/Documents/
Autism%20Release%20FINAL%202.05.pdf
4
Centers for Disease Control and
Prevention (CDC). (2009). Autism
spectrum disorders: Data and statistics.
Available online at: www.cdc.gov/
ncbddd/autism/data.html
5
Centers for Disease Control and
Prevention (CDC). (2009). Autism
spectrum disorders: Research. Available
online at: www.cdc.gov/ncbddd/autism/
research.html
6
Centers for Disease Control and
Prevention (CDC). (2009). Concerns about
autism: CDC statement on autism and
thimerosal. Available online at:
www.cdc.gov/vaccinesafety/Concerns/
Autism/Index.html
7
American Psychiatric Association.
(2009). DSM-5 publication date moved to
May 2013 (press release). Available at:
www.dsm5.org/Newsroom/Documents/
09-65%20DSM%20Timeline.pdf
8
American Psychiatric Association. (2010).
Proposed revision: Autistic disorder. Available
online at: www.dsm5.org/
ProposedRevisions/Pages/
proposedrevision.aspx?rid=94#
9
U.S. Department of Education. (2007).
27th annual report to Congress on the
implementation of the Individuals with
Disabilities Education Act, 2005 (Vol. 2).
Washington, DC: Author.
Autism Spectrum Disorders (FS1)
Organizations: Y
our Gateway to
Your
Information, Connection, and Research
Tips for TTeachers
eachers
• Learn more about the autism
spectrum. Check out the research
on effective instructional interventions and behavior on NICHCY’s
website. The organizations listed in
this publication can also help.
For incredible amounts of information on
ASDs, visit the organizations listed below.
Autism Society of America
1.800.3AUTISM (1.800.328.8476)
http://www.autism-society.org/site/
PageServer?pagename=about_home
• Make sure directions are given
step-by- step, verbally, visually, and
by providing physical supports or
prompts, as needed by the student. Students with
autism spectrum disorders often have trouble
interpreting facial expressions, body language,
and tone of voice. Be as concrete and explicit as
possible in your instructions and feedback to the
student.
• Find out what the student’s strengths and interests are and emphasize them. Tap into those
avenues and create opportunities for success.
Give positive feedback and lots of opportunities
for practice.
• Build opportunities for the student to have social
and collaborative interactions throughout the
regular school day. Provide support, structure,
and lots of feedback.
First Signs
http://www.firstsigns.org
Autism Speaks
888-AUTISM2 (288-4762)
http://www.autismspeaks.org/
OASIS @ MAPP
Online Asperger Syndrome Information
and Support (OASIS) and MAAP Services
for Autism and Asperger Syndrome.
http://www.aspergersyndrome.org
Exploring Autism
Information in English and Spanish.
http://www.exploringautism.org/
Autism Collaboration
http://www.autism.org/
• If behavior is a significant issue for the student,
seek help from expert professionals (including
parents) to understand the meanings of the
behaviors and to develop a unified, positive
approach to resolving them.
Interactive Autism Network
http://www.ianproject.org/
• Have consistent routines and schedules. When
you know a change in routine will occur (e.g., a
field trip or assembly) prepare the student by
telling him or her what is going to be different
and what to expect or do.
CDC | Centers for Disease Control and
Prevention
Information in English and Spanish.
www.cdc.gov/ncbddd/autism/index.html
• Work together with the student’s parents and
other school personnel to create and implement
an educational plan tailored to meet the
student’s needs. Regularly share information
about how the student is doing at school and at
home.
NICHCY: 1.800.695.0285
6
OAR | Organization for Autism Research
http://www.researchautism.org/
National Autism Center
1.877.313.3833
http://www.nationalautismcenter.org/
index.php
Autism Spectrum Disorders (FS1)